We are Cavernoma Alliance UK
Founded in 2005, our aim is to provide support and information for all those affected by cavernoma including friends, family, carers and professionals.
With over 2800 members in the UK and worldwide, the charity aims to raise awareness of this relatively unknown condition throughout the general public as well as the medical community.
What is a cavernoma?
A cavernoma is made up of abnormal blood vessels and can be found in the brain and/or spinal cord and looks like a raspberry.
1 person in 600, in the UK, has a brain cavernoma without symptoms (asymptomatic). This equates to roughly 90,000 people – enough to fill Wembley Stadium. A spinal cavernoma is rarer than a brain cavernoma.
In this video, hear clinicians and members talking about their experiences of cavernoma.
Our services
Telephone Support
Our telephone support line is open 10am - 4pm, Monday to Friday
Email Support
You can reach us via email at any time, and we aim to respond as quickly as possible
Events & Annual Forum
We organise multiple events around the country
CaverBuddies
On going peer support when you need it most
Professional Lectures
Presentation and research events around the country
Meet Ups
Join us, and members from your local area for a coffee & chat
Therapy
Therapy for adults, children and carers to work though concerns
Webinars
Online meetings, presentations & chats providing information & advice
Carers Support
Support, chat and advice for carers of those with cavernoma
What our members say...
A world without CAUK doesn’t bear thinking about!
Get in touch with us
Valentines Fundraisers in support of £8000 for 80 years campaign
We all know this year we cannot celebrate Valentines as we do normally with meals out in restaurants and other special trips so we thought we would bring a Covid-19 friendly weekend to you as part of our £8000 for 80yrs campaign
Home Learning Resources
We have spoken to a number of teaching staff, done a little research and have put together a few resources which may help you to help your children. Hopefully it might take the pressure off by showing you some new ideas, offer support and show you that you are doing a great job.
David’s Birthday Fundraiser; £8000 for 80 years
Our wonderful science advisor and all-round key player at CAUK, David White CBE, is turning 80 years old! David has seen CAUK expand amazingly since the early 2000’s. He would love you to join his campaign for his 80th birthday to raise funds as a thank you for the wonderful support that CAUK has provided to us all since its foundation in 2005.
Kai Alyssa Bossom – I had a stroke in my 20s
Kai Alyssa Bossom discusses having a hemorrhagic stroke at age 25, and how she felt and the on going recovery process.
They said No, I said Yes! with Will Sears
Will is an inspirational 14 year old member of CAUK through the Caverfamiles group. In this webinar where he is accompanied by his mum, he shares the story of his cavernoma and epilepsy journey and how he continues to live a full, exciting and happy life doing the things he loves, despite his condition
Member Success with PIP Application with Kathryn Douthwaite
In this webinar Kathryn who has had significant seizures due to her cavernoma and has had to retire from her job at local government will share her experience and top tips for a successful application
CARE Pilot Trial Annoucement
The Cavernomas A Randomised Effectiveness (CARE) pilot trial CAUK is the Patient Group in a consortium also including senior clinicians with a special interest in
The influence of the microbiome (the bacteria in your gut) on cavernoma development
The influence of the microbiome (the bacteria in your gut) on cavernoma development N.b. In the US, cavernoma are called cavernous angioma Introductory text for